My "breakthrough" day...

[curlygrl31]

Finally, the posting I have been waiting for... a positive one...

I've had issues with eye redness, dryness, burning & inflammation for the past year. I had been to see 8 opthamologists, two allergists, two dermatologists, a gastroenterologist and two primary care physicians. I have literally tried every anti-inflammatory, dry eye technique, drop and medicine that is on the market. One doctor I saw said, "We don't know what is happening with you, but it is only going to get worse."

I had been diagnosed differently by the eye docs, but mainly the consensus was ocular rosacea (I have mild facial rosacea). However, I never responded to doxy, lid hygine techniques, (I did not really have lid involvement), etc. I have never had contacts, Lasik.

Two major changes occurred just before my downward spiral at a healthy 31-years old... 1.) Switched birth control pill to Yasmin for hormonal acne. 2.) Went thru the stress of divorce and currently a stressed-out single mother. In the past year, I have felt very stressed (like that "fight or flight" feeling all the time), and have lost weight and cannot gain.

Here's my breakthough... finally, a very empathetic primary care doctor ran an array of bloodwork and hit on what I feel might be the "right test." It was just discovered my cortisol levels are through the roof. I'm now being referred to an endocrinologist. After a year of worry and anxiety, not knowing what/why this was happening, I feel I finally found some direction. Proof that something is REALLY wrong. I felt I had been walking around with a blindfold on, looking for direction and someone finally took the blindfold off and pointed me right where I need to go.

To all who are at the end of their rope. Hang on. Fight for your health. Be your own advocate. Learn all you can and press your doctors if you know something is not right.

HOPE feels better than winning the lottery. Today, I have hope.

Curlygrl

[NYer]

OMG, Curly, I was just diagnosed with the same thing this week! High cortisol levels and adrenal fatigue!! And I read that there is a definite correlation between those issues and mucous-related body functions...like production of tears!!!

[acarol]

Thats great that ye got a proper diagonises - it really must make the world of difference. I know i was diagnoised with MGD but at times i feel there is other stuff going on aswell. I never really FEEL 100% over all.

[curlygrl31]

Nyer,

How am I not surprised? You are like my long lost twin with our similarities. My jaw did really drop when I read that, though. Doesn't it make you wonder if Yasmin BC pills altered the hormones for us??? I am still suspicious.

I don't have an endocrinologist appointment until late Oct/early Nov., but my friend who has a hubby doctor said I should probably be in there soon to get a CT of my adrenals to rule out anything really urgent (i.e. tumor).

I know you are great with the research, so anything you find out about the correlation to the eyes, please post. I am sure we are not the only ones in this point.

Meanwhile, you should see what I am able to eat and still not gain a single ounce. That scares me. I'm down to a size 2 and am normally a 6-8.

Keep in touch!! Always happy to hear from ya, Nyer!

Carrie

[alisonW]

getting a diagnoses to work with! I have the same issues as I mentioned in a reply to you before and had pretty much accepted that there "was nothing else" going on. I have had thyroid issues in the past (not to mention anxiety disorder too) and am now going to make an appointment with my PCP and/or endocrinologist to check my cortisol levels, etc.

I still remember the first time I woke up to red eyes - it was the day before a very anxiety-filled vacation (sounds strange doesn't it) at an especially stressful time in my life. I've seen 5 different eye docs,a corneal specialist, an allergist, and three derms also - with no imrpovement.

Thank you SO much for sharing this curlygrl31 (you too NYer) because otherwise I would never had thought there was any correlation. This gives me some hope.

Keep us posted.

[curlygrl31]

One more coincidence from today -- on the website medhelp.org, I typed in Yasmin & Cortisol and clicked search. Another person mentioned a correlation between the two in her case. Even my primary care said, "this pill is still new enough that they are learning more about the effects."

Allison -- I am happy to share!! If I can help one other person find a clue to what is happening with them, I will be singing my story on the hilltops. We are not alone, even though it often feels as if we are. We'll get better together.

Primary care ordered a CT of my adrenal gland in the coming weeks to rule out the scary stuff. I'm anxious to get to the bottom of everything and feel like my chipper self again!

curly

[NYer]

Well, to be fair to Yasmin, I was on other birth control pills prior to Yasmin and had the dry eyes then, too. Of course, I have no idea what my Cortisol level was at that time. Going off Yasmin for 7 months, my eyes got worse, and for the past three weeks, I'm back on the pill but I'm on Mircette. Face looks a bit better, eyes are still dry. But now that I think of it, the Cortisol/DHEA saliva test was done about a week before I went back on the pill. So that was when I was in my 7th month of no pills. Hmm. I should get another Cortisol test done after I'm on the new pills for awhile.

[Lucy]

Meanwhile, you should see what I am able to eat and still not gain a single ounce. That scares me. I'm down to a size 2 and am normally a 6-8.

This might be a sign of diabetes. My daughter was that very same example and was dx with diabetes. Your GP could check your blood sugar very simply as a precaution. I hope that's not what you have, but those signs are awfully familiar to me. Lucy

[NYer]

Good point, Lucy. It could also be thyroid-related. Curly, did your doctor do a full (fasting) blood test?

[Kathel]

Curlygrl and all,

You might want to read "Adrenal Fatigue: The 21st Century Stress Syndrome" by James Wilson. I found it interesting and it is certainly not a subject that most physicians are familiar with. Good luck!

BTW, I too have had a hormonal component to my dry eyes: menopause. I recently started using a testosterone drop (testosterone .05% in a 1% carboxymethylcellulose base) twice daily, and I feel good, even approaching "normal" some days! I get by most days without using any drops until late evening. Also, I got off all estrogens.

Kathel

[calli66]

Is the testosterone drop an oral drop? And you're saying that now your eyes are better, and you don't need (eye)drops as much?

I am confused---is the testosterone drop an eyedrop, too? I have not heard of this before.

I have tried the testosterone gel applied to the skin, and also the bio-identical cream that's a blend of testosterone/estriol (I think). Neither of them helped me, and especially not the one with the estrogen-type hormone in it.

C

[curlygrl31]

Lucy, I thought perhaps diabetes too, but I want to say I had bloodwork checked on that and it was fine. The endo I am seeing in late Oct. will run a full panel of everything, so I am sure they will catch it if that is what is going on.

Nyer, I thought Yasmin only because of the way that this drug is completely different than all other BC pills. Like you, I was on the pill for years before switching to Yasmin. I have been off of it a while now, but I still have the feeling that that might have tipped the hormonal balance for me.

Curly

[NYer]

Hey Curly,
Yeah, I know what you mean because Yasmin has the additional hormone in it that blocks testosterone. It also had a very diuretic "quality" to it which certainly doesn't help dry eyes. It could certainly be part of what caused our hormonal imbalances though. No question that the dry eyes aren't distinct from all other problems in our bodies. Something else somewhere is causing it, I'm sure.
-NYer

[Kathel]

Calli66,

Yes, the testosterone eye drops are used in the eyes twice daily. The pharmacist said the testosterone is derived from yams. And yes, my eyes are feeling better with them. I don't think many ophthalmologists are familiar with this treatment. Mine trained in New York.

Yasmin and Yaz both contain drospirenone as their progesterone component, which has less androgenic activity than other progestins. That's why we frequently recommend them to our patients with acne. (I practice dermatology). That could also be why they may be triggering or exacerbating dry eye, as the meibomian glands need androgen stimulation to work.

Just my musing.

Kathel

[NYer]

Kathel, thank you for that very helpful post.

[bernmee]

Curlygrl..

Will you keep us updated as to what your course of treatment will be once you are done with your tests.

Thanks,

Bernadette

[curlygrl31]

Will do, Bernadette. Went in for a CT yesterday to rule out an adrenal gland tumor b/c of my elevated cortisol. I see the endocrinologist in the coming weeks for my first visit. I definitely do not feel right, so I'm ready to get to the root cause after a year of feeling like this.

Kathel, didn't know you also practiced dermatology. Interestingly enough, I went on Yasmin to combat hormonal acne on chin/jawline/face and my back (yick!). Now off of Yasmin for months, I still notice my back is very oily and have problems with acne again. I just feel like my whole body is out of hormonal balance. I'm using Finacea and went on another BC pill (orthocyclen), but still having some issues. Any thoughts on how to combat that w/out messing up my eyes further? Topicals don't seem to be doing the trick with the more cystic/hormonal acne. Well, and I also assume it will get better once my cortisol levels are back in check.

Nyer -- have you had any skin challenges? Just wondering since our stories are so similar.

Curly

[NYer]

Hi Curly,
Oh yes, big-time! While I was off the pill for 7 months, my face broke out terribly. I never broke out like that before. I'm pushing 50 and looked worse than I did when I was a teenager. I'm now back on the pill for the past 40 days. I'm taking Mircette and I'm doing 3-month cycles (only 4 periods per year, which is nice - but also it keeps your hormone level constant for 3 months instead of dropping off for a week every 4 weeks). It's made a dramatic difference in my skin. I'm still getting some little pimples on my chin but nothing like what I was getting. By the way, you can do the 3-month cycle with any B.C. pill that has a single level of hormone (you can't do it with the tri-phase pills). The one that is designed specifically for that is called "Seasonique". Each pack actually has three packs built into it.

Yasmin made a more complete improvement in my skin, but I still think that the fact that it has a diuretic quality to it is a negative for dry eyes. But Yasmin completely cleared up zits and prevented any unsightly facial hair (chin, lip).

I started taking a supplement called "Adrenal Support", but it's too soon to see any results. That's supposed to help the cortisol issues. I think it might be making me a little anxious, though. I didn't take any today. I'm going to take it again tomorrow and see if I feel anxious again.

Oh, by the way, I tried Finacea a while back and it didn't help. No reason not to try it but don't get your hopes up.

I'm really glad that your doctor ruled out a tumor. But I hope you do realize that a tumor would be a very rare reason for the elevated cortisol. Elevated cortisol and adrenal fatigue are actually rather common, it turns out, and usually is a result of stress in some way (keep in mind that stress is not necessarily just psychological - there are certainly many physical stressors that could cause it.).

-NYer

[curlygrl31]

Hi Girls,

Wow -- this article was an eye opener for me on the heels of my high cortisol news. Just passing along anything I find helpful!!

Endo appt in one week. Let's hope I am on the right track here.

Curly

[Rebecca Petris]

This is very interesting. I'm looking forward to hearing where you gals get with the adrenal business. I was diagnosed about 4 years ago with adrenal exhaustion by a really good naturopathic doc in Tampa. She put me on something compounded, I forget what. I never saw any difference at all from it and eventually kind of let it peter out and never followed up (bad habit). Never occurred to me that there might be any dry eye tie-in however.

[NYer]

Curly - where's the article?

[curlygrl31]

Nyer,

LOL -- well, my excuse for forgetting to post the article -- adrenal EXHAUSTION! Ha, ha! Maybe that can be my excuse for everything!

http://www.ei-resource.org/articles/...pidly-or-not!/

This is the article above -- what do you think?

Rebecca, I do feel like we are on to something, and noticed this posting from another girl recently:

http://www.dryeyezone.com/talk/showthread.php?t=7173

I also seem to remember a few months ago some poll about "dry eyers" and stress levels.

Curly

[NYer]

Very interesting and helpful article. Now if we could just find an article that tells us specifically what to take, how much, and when.

[fed up kate]

hey everyone

just read all these posts and i think im the same well i was on yasmin for just over a year but it made me really bad tempered and i was really depressed on it but i started gettin dry eye when i was on it so i came off it thinking it was that but 6 months down the line there still dry and not getting anybetter so now im even more depressed.

so could yasmin have triggered the dry eye but if so after 6 months wouldnt it of gone by now if it was.

about the cortisol tests,im very lathargic(cant spell it lol) all the time and iev always had trouble with my weight and doesnt mater how much i eat i dont gain anything so im always a 6-8 but i think ive had a test for diabetes and dont have that.

would anyoone suggest having more blood tests as i went to my doc couple days ago and he said there are no tests that can be done so im really confused

[NYer]

You have to go to an "Alternative" or "Complementary" Physician or Health Care Providor, like a Naturopath. Regular MD's are clueless about testing for Cortisol and Adrenal Fatigue issues.

[curlygrl31]

My primary care referred me into an endocrinologist for hormone testing (DHEA, cortisol, etc.). I have had lots of bloodwork, a 24 hour cortisol test, dexamethasone test, etc. I go back for results tomorrow with the endo. doc, so perhaps this will reveal something.

Sorry, but I remain very suspicious about Yasmin! I have heard this story many times over. I think once your levels are thrown off it takes much longer for your body to rebalance. Will keep you posted if anything comes back abnormal. It's crazy when you WANT them to find something wrong, just to give you some direction.

Curly

[Meebo]

My primary care referred me into an endocrinologist for hormone testing (DHEA, cortisol, etc.). I have had lots of bloodwork, a 24 hour cortisol test, dexamethasone test, etc. I go back for results tomorrow with the endo. doc, so perhaps this will reveal something.

Sorry, but I remain very suspicious about Yasmin! I have heard this story many times over. I think once your levels are thrown off it takes much longer for your body to rebalance. Will keep you posted if anything comes back abnormal. It's crazy when you WANT them to find something wrong, just to give you some direction.

Curly

I am very excited to hear about you guys making headway. As some of you know, since we spoke briefly on the boards, I have ocular rosacea according to Dr. L, went to a dermo and he said I have slight rosacea on the left side of my face. Interesting enough, my left eye is the one that bothers me the most. I have MGD and have been taking azasite. It has been working, but when i decreased the dose it flared up again. I then increased dose again.

I am going to try acetylcysteine. You guys should ask your doctors about it. I read a lot of positive things about it but I do not know if it is a definite cure. There is someone on this board that said it cured them.

While I am a male, it would be interesting to have a full blood analysis done by an endo. I agree with all of you; seems like there is something more to it.

[Julie1]

Hi CurlyGrl,

I was just thinking of you today and wondering if you had any further updates on your testing with the endocrinologist.

I hope you're doing well!!

-Julie

[curlygrl31]

Hi girls,

Hate to tell you, but I reached an end on the endo path! I had two cortisol bloodtests that were off, but then my 24-hour cortisol test was fine. The endo didn't feel there was a link.

Back to square one for me. I've been on compounded cyclosporine, but then also battled an eye infection that caused burning for about 4 months (eye doctor missed it!!!). Intermittent redness and soreness continues...

Curly

[NYer]

Oh Curly...that just stinks. I mean, I'm glad that your cortisol is OK but the rest of it stinks. My cortisol is "normal" in the morning and then just drops. I've been getting B-12 shots weekly for the past 5 weeks, too, because my B-12 was low, too. It has no bearing on my eyes, but I do think my energy level is better than it was so some degree.

There is no question in my mind that what we both have is something systemic that is causing lots of things, including the dry eye. But it looks like we have to look at every component of our systems to figure out what it is.

I'm still peeing a lot, too, from the B.C. pills and I'm sure that loss of fluid doesn't help my eyes any. But that said, my eyes are definitely better ON the pill than off the pill. So hormones still are a factor.